In Italy there are about 30 thousand young people with a serious pathology and complex care needs. To overcome the sense of marginalization that derives from it, the game Dare was created, which deals with the themes of prejudice and friendship within the hospital.
A video game for teenagers between 14 and 19 that teaches how to include peers with an incurable disease. To break down prejudices, protective distance, annoyance, embarrassment, fear of not knowing how to behave. The fragility tab immobilizes, but those with an irreversible disabling pathology often absent themselves from school to follow therapies or in bed, attached to machines, no different, they have the same emotional and social needs as their classmates, declares Elena Castelli, general secretary of the Maruzza Foundation, which promotes the culture of pediatric palliative care in Italy and abroad and has created the game. “Dare”, so called, tells of the friendship that arises in a hospital between Zeno, a 16-year-old teenager hospitalized for a broken arm following an accident, and Violetta, the same age, with Ondine’s syndrome (rare genetic disease) , hidden in the neurology ward, who takes refuge in the boy’s room one night to reach the vending machine for sweets on the ground floor. The player will take on the role of Zeno and will have to overcome different levels of difficulty in the fight against his enemy, that is the avatar of prejudice. The character will first feel indifference and disgust towards the girl’s illness, then he seems afraid, then the fear of the illness turns into solidarity and fear of losing friendship with Violetta.
The presentation
The videogame, which will be presented for the first time on November 18, at the national congress of the Italian Society of Palliative Care, is already available free of charge for devices with Android operating system on the Google play platform (https: //.dare.fondazionemaruzza.org). In Italy there are about 30 thousand minors affected by incurable diseases with complex care needs. They suffer from neurological, muscular, respiratory, cardiological, metabolic, chromosomal disorders. Many of these are rare, and cancer affects fewer than two in ten cases. One of the problems of these children and young people is precisely the loneliness and social exclusion they can experience. The family tries to plug the holes of affection and relationships but will never be able to replace the company of peers – comments Franca Benini, head of the pediatric hospice of the Padua polyclinic, reference center for the Veneto region for pain therapy and pediatric palliative care -. Physical pain can be controlled with drugs, while integration into a peer group requires a change of mentality. And the videogame represents a very powerful sensitization tool, which goes to the root of the cultural problem. Making people change their minds is a very difficult undertaking.
Fragility is scary
The inclusion of frailty then becomes a serious game. The need for hospitalization, home assistance, limitations prevent precious opportunities for development, play and experience of the self necessary for a good quality of life – continues Castelli -. It is important to promote knowledge and familiarity with the subject of incurability to ensure that children and families living with the disease are not marginalized, isolated or forgotten. One of the spontaneous reactions is avoidance. Faced with young people with very serious and complex health problems, it is normal not to know how to behave and how to communicate – underlines the secretary of the non-profit organization -. You run away because you think you are not able or you take an overly protective approach that creates distance and discrimination. A normal friendship can be cultivated despite the illness. The school can teach a lot, perhaps in the hours of civics. We have many positive experiences – remembers Benini -. You can make connections online, watch and comment on movies with someone confined to a bed, or visit them at home.
Involve schools
The innovative videogame is part of a larger project intended for secondary schools, “How to leave equal”, which the Maruzza Foundation has defined with the collaboration of the University of Perugia, the pediatric hospice of the Padua polyclinic and the association Sorridi con Pietro. an educational program that in the pilot phase, by 2022, will involve the classes of five institutes distributed between North and South – illustrates Castelli -. It provides for the training of peer educators among students who will have to explain to their peers the rights of the sick child, the definition of incurability and what are the emotions that a diagnosis of incurability arouses in the patient and his family, as well as empathy and so on. ” Law 38 of 2010 for the treatment of pain and access to the palliative care network. The peer will have a kit of tools at their disposal: a video-testimony, a reading with the voice of the actor Francesco Pannofino, the creation of comic strips and a card game. To finance the translation of the game into English, the training of peer educators and the printing of operational manuals in order to disseminate the project in other schools, a fundraiser was opened on the “Dare” website.
Palliative care
Even children and adolescents with an illness without recovery are entitled to receive palliative care like adults (law 38/2010 establishes this). But the assistance network is still lacking. The intervention must be provided by a multidisciplinary team and organized, according to the required intensity, in hospital, hospice, home and other outpatient facilities in the area. The goal is to ensure the best possible quality of life for the patient and for the whole family. This also means encouraging school, sports and social reintegration.
November 17, 2021 (change November 17, 2021 | 13:35)
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